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I am recapping my issues below - I welcome any experiences or suggestions on what to do from here - besides getting a second opinion which I am going to do.  Are there are medications?  IBD type drugs? Diet etc.  I am not able to sleep and stomach and anal discomfort is bad.

  • Diagnosed UC 11 years ago, J pouch surgery 8 years ago
  • Chronic Pouchitis started relatively early after surgery, antibiotic dependent has been on Cipro for approx. 7-8 years – functioned pretty well
  • Recently has been having a lot stomach pain, nighttime accidents, and problems/pain in anal area (he thought it was hemorrhoids – large lump on anus).
  • Dr. added Metronidazole on top of Cipro to try and address stomach issues.  Took for a week – maybe helped but was getting very nauseous. Stopped the Metronidazole.
  • For anal pain, Dr. initially treated for hemorrhoids with topical ointments – over email.  Lump wasn’t observed in office (by the time he got into see Dr. the lump had subsided) pain was still there but not as severe.
  • 2/15 Dr ordered MRI to evaluate anal issues.  MRI indicated small fistula and one branch.
  • 2/18 had a pouch scope (it had been three years since last one) and was supposed to get a seton or surgery for fistula
  • Surgeon did procedures and said pouch looked good.  No signs of Crohn’s or inflammation – waiting on biopsies.  However, he was unable to find opening of fistula so did not do any surgical procedure. Despite this, there was a lot of blood post procedure.
  • Feeling very poor (worse since having the scope).  Stomach pain is daily on and off all day and seems worse at night.  Also having nighttime accidents and anal pain.  From his perspective, both seem worse after having been scoped.
  • Stool frequency isn’t excessive 5-6 per day consistency somewhat controlled by food (not always diarrhea etc.)
  • Nausea on and off for several weeks
  • Continue to have extreme nighttime sweating – this has been going on for years
  • Stomach pain is on and off high and affecting ability to function normally
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It sounds like cuffitis to me.  I am having the same issues almost compared to you.  My doctor finally put me on a oral medicine instead of suppositories.  I found out it take 6 plus weeks to start working.  She took me off Cipro since I was on 7 days and my suppository.  I feel terrible and the pain inside is unreal.  But it’s right inside of my anus.  I don’t believe drinking water has a lot to do with it but I drink a lot during the day.  And it hasn’t helped me at all.  Just saying.  

Please keep me posted.  I’d like to find out what is going on and how you end up treating it.  Cipro might really help you out if it’s inflammation like cuffitis.  You might want to ask your doctor?  My scope I had, pouch looked great but inflamed cuffitis.  

Best of luck.  I hope I might haven’t given you some ideas to look into.  I am sorry you are in pain.  I totally understand.  

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